This story took place June 23rd 2015 the fourth Tuesday of the month. For those who have followed any portion of my journey you know that I have donated my time facilitating a local BRAIN TUMOR SUPPORT GROUP for over 10 years and that the 4th Tuesday is dedicated to this group. I typically schedule nothing all day and I get to the hospital rested and early to meet and greet the families both new and those who have attended for years. I like to be my authentic self. I want to be completely and whole heartedly in the moment so rested is best. Today was no different except for one little change. I have been trying to schedule a brief follow up appointment with a Corporate Brain Buddie and today they could meet me briefly before the group at the hospital. So I stepped out of my normal and scheduled a short meeting before I picked up the parking stickers etc. I had it all planned so I thought. An important piece to this story is each time I drive in town for group I always say a little prayer and ask that all who are supposed to be at group arrive safely. I ask that I have ears to hear those who need to be heard and eyes to see those that need to be seen. I ask to help me be all I was created to be. I want to be a good leader. I know without a doubt I was meant to help the hurting , the sick and yes sometimes dying. I was meant to encourage and share hope. For me I feel without prayer I would not be me. Well I got to the hospital and I text the person I was supposed to meet letting them know that I had arrived. The reply was “I have to cancel” AGAIN. Of course I had 2 choices get upset or live in the moment and be still. I choose the second. So I was quiet and figured well I am early and not in the heat , and not rushing decide to relax before my next stop. As I sat I people watched and then this one couple stood out. I saw this lady and man exiting the doctors office. The wife pushed the hubby in his chair to the side and she walked down the hall and came up and back a couple times. I asked if I could help her find something she said ”actually I am looking for water and there is a fountain but no cups.” Me- hold on I think they might have some in the Dr’s office. I went in the office and sure enough they did. I went one step further and filled it with water from a machine. I walked out and gave it to them. The man who I now know and call Mr. Bernie asked me my name ? ( HE OPENED THE DOOR for conversation and this is where it began,) He said I looked familiar. I asked if he had a brain tumor he said no but began to tell me why he was at the hospital and then our eyes met. He then asked what I do and I told him how I have survived BC and he said I was a true miracle. He told me how he is a retired Chaplain and some of his story about he and his wife. I told him I trained to be a volunteer chaplain after my first surgery and shared some of those stories and maybe that was our connection. His wife just couldn’t believe the connections and sat back and smiled. He looked up and said ” I was a Chaplain for many years in hospitals” Communication is vital and YOU HAVE THE GIFT, me- what do you mean? you know how to do it , You know how to communicate with those who need support , care. Your a good communicator. I scooted down so I could look at him and not over and he asked me Do you know the song “YOU ARE MY SUNSHINE” Me- Oh my goodness do I??? I told him he was going to make me cry I call my son that and my daughter my daughter shine. More importantly I just gave my son a wooden plaque for his birthday a few days ago he turned 26. The plaque said exactly that ” YOU ARE MY SUNSHINE” I shared how I wrote no matter how old you are you will always be my sunshine. Mr. Bernie said that he could tell I was SUNSHINE to those I meet . He asked if I knew the words? I said I believe I do. He said sing it with me. He looked at me and then his wife and with a big smile in the middle of the hospital tears flowing down my face I sang YOU ARE MY SUNSHINE with him. Here is the what I call the “GOD wink” I could have let the appointment that didn’t happen cause frustration and I would have left. I choose to be still. I choose to be in the moment not caught in disappointment , and in that moment I realized I never got stood up I was actually at my destined appointment. On that car ride in to my meeting I prayed and believed I would help all those I was supposed to. Well I DID! and in the process I was blessed before my group even started. Now here is the part that makes the smile even bigger. I chatted with them and walked them to the door to meet their ride. Mr. Bernie shared his father worked with Mr. Jimmie Davis who wrote the song YOU ARE MY SUNSHINE. Mr. Bernie’s father actually helped write the tune for the song. Mr. Bernie is due back for more surgery soon. I gave his wife my card and told them to call me so I could be his sunshine! I will decorate his room and the only gray that will be in there will be GRAY MATTERS! If we are still and in the moment we may just receive the sunshine we need. Today Mr. Bernie was my #ifonlyforone he was my #sunshine
I haven’t shared my IF ONLY FOR ONE’s in awhile and two days in a row BAM! This story took Place Thursday May 7th 2015. I have to start with a little foreshadowing. I was getting ready for the day and I decided to wear a new top I purchased a few weeks ago. It is made of thin tshirt like material so poking sticking a pin through it would surely leave an obivous the next time I wear it. Out of habit I went to stick my lapel GRAY RIBBON and paused thinking well its a new shirt and hmmm what else could I wear for my gray today, my bracelet but you can’t see the ribbon . STOP! I said “SELF” its a shirt not a BRAIN TUMOR. It’s a tiny hole in a t-shirt replaceable not a massive slice in my head. No second guessing now and WHALA I put the ribbon in my shirt. ( seems trivial but stick with me)
Now to take on my day. I ran a bunch of errands and on my way home I stopped at a FEDX print store so I could make some copies of the GRAY MATTERS FOUNDATION poster “Wear your Gray in May” . I have my flash drive in hand and ask for help. A nice man named Bill walks me over to self serve and this is where it happened. We chatted for a bit with small talk. He has a PA accent. My husband is from PA so that opened the door for conversation. I ask what brought him to AZ and that is all it took. Next he walks me through the steps to get the file opened and on the screen. Once the first copy was made the BT conversation happens. I ask did he know it was BRAIN TUMOR AWARENESS month. NO. He reads the poster and it opened the door for even more questions. I share how I started this foundation and what I do and my passion for the cause because having experienced it first hand I KNOW! what it feels like to need that encouragement and support. Then it happens ……He gives me that look and Asks YOU???? Yes me I reply. He went on to say how lucky, blessed I am. And then the look that breaks my heart. That tone I have come to know way to often, that moment when I sense he knows more about brain tumors than he cared to EVER! He gives a BIG SIGH Really? and with the heart broken look went on to share because—-”my brother in law was diagnosed and died in less than a year” Before another word was said those horrible three letters entered our conversation. GBM ( in my mind DANG IT! ) I am so sorry Bill. He shared how tough it was to watch but how wonderful his sister in law handled it. We chatted a little bit more and I shared more about the special details of May and wearing gray. Oh my goodness it occurred to me Bill is my one today. I shared my business card with Bill and apologized I didn’t have a brochure but please keep take a poster. I offered for him to give his sister the card. I shared if she was open to it I would be happy to reach out to her . WAIT I was thinking & It hit me. I am wearing my special ribbon the one that is going to leave a small reminder . I only have one of these ribbons but that’s ok they need it. Today he & his sister are my ” if only for one”. I proceed to remove my GRAY RIBBON so I can gift it. I asked Bill ” would your sister wear a ribbon if she had one?” OF COURSE. Well give this to her. It’s a special ribbon because it has a little angel on it and it represents those who fought a good fight. I always tell my buddies I am a voice for those who no longer have one. She can wear this and be reminded he is not forgotten and someone is a voice for him in this cause. He will not be forgotten EVER. Bill said he just couldn’t take the ribbon. I shared with Bill I knew this was for his family because I almost didn’t wear it today and now he shares his story. It for sure is meant to be his sisters ribbon. You and your family are “my one” and I was supposed to give this ribbon to you. You just never know the reasons but follow those little nudges.
August 30th 2015 marks the 23rd anniversary of the night my grandma took her last breath. I would like to focus on what the day did for me. I would like to focus on how that night changed my life for the better. It was this loss, this moment, the journey, the moment in my life that would be my life changer. Although that night broke my heart I choose to take the power from the three letters GBM ( that is an AGGRESSIVE brain tumor) that caused her death and focus on the peace. If you know me you know my faith is 100% of what gives me my peace my strength. If you know my story you know I lived with this grandma a good portion of my young life and that her foundation for life was her FAITH. Knowing her faith was her comfort then you will understand that it was for that reason I was able to find some comfort when dealing with the finality of her death. It was her reassuring us, “the family” she would be just fine because when she died she would be in heaven with her Savior. This was 100% of how she lived. I choose to keep the memories of how she lived and how she professed to be for eternity as my comfort. Brain tumors are not a pleasant journey when they decided to go crazy. 23 years ago and the fact she opted for no treatment after surgery her BT journey was short. She was diagnosed on Father’s day and approximately 9 weeks later I was watching her take her last breath. Those days leading up to that evening were such a whirl wind. I will spare you the family turmoil which that in itself is heartbreaking to say the least. Families should come together not divide another reason for my passion to share hope, kindness and knowledge about how this disease can destroy more than the patient if not prepared to cope as a TEAM. I know reading my words , telling you the bits and pieces of my journey only touches the surface. Pain is personal. I never want to imply mine is more painful than yours. Each family copes differently. The fact is I miss my then 62 year old grandma. I hope you know I hurt with you when share your pain. I’m also happy when we celebrate your success, your milestones your TUMORVERSARIES , the completion of treatments. I love it when we are “CELEBRATING” YOU. I believe in success, Faith &Hope & Love and I sharesupportnotstatistics and believe in what I say because I have seen just as much good even in the sad. This day 23 years ago sparked something so deep I had no idea then but now I know it created what I was meant to do in life. Who could have imagined that my words “I WANT TO BE A VOICE FOR THE CAUSE” six years later would mean I would start a personal journey and experience first hand the pain of brain cancer physically. 7 years after that I would be the founder and president of a non profit called THE GRAY MATTERS FOUNDATION. I currently communicate with families in 21 countries and just about all 50 states. So today I choose to share the goodness this journey brought. Thank you grandma Kirk. Thank you for the years you taught me so much. Thank you that when I needed the education most I was prepared. I encourage all of you reading this take time to learn in all you expierence. Slow down and have ears to hear, eyes to see and words to make a difference. It won’t be perfect but sometimes right in the middle of the pressure you are being designed for your purpose. The seed of your success might be growing and someday you will know that what you are doing is everything you were created to be. It was that one night 23 years ago that started my walk to find my ifonlyforone and I didn’t even know it. *PS. TODAY I WILL CELEBRATE AND ENJOY A DONUT AND COFFEE IN HER MEMORY
Today April 7th 2015 is my Eight year SURGERAVERSARY. 8 years since my last surgery which was surgery number 5. It’s crazy to read and even more strange to type. I have been cut on FIVE TIMES. Although it is not defined in the Webster’s Dictionary anyone who has survived a major surgery understands the annual reason to celebrate. I try never to take for granted that I am always an MRI away from hearing those words the BT has returned- but it does no good to worry so I live life and share the same with others. I try not to stress & always focus on being blessed. Thank you for being part of my journey.
I would like to thank all of my brain buddies who were able to attend my SWEET 16 Celebration #GMFsweet16. It was an amazing celebration and the turnout was beyond INCREDIBLE. Some extra special moments : one was when my high school journalism teacher surprised me. She immediately rushed over to the party after flying in from out of state to be sure she didn’t as she said “miss the important celebration”. I had no idea she would be attending and it was only when this person snuck up behind me and put their hands over my eyes and I turned around to look….it was MARY BETH aka MB or Mrs Reed, my teacher now friend. My neurosurgeon Carrie Walters stopped by to share her love and she is in the photo’s. So many attended. I’m told it was over 200 and forgive me if I don’t mention you personally because everyone is equally important. Thank you to Damian Hartze for hosting our event at his restaurant The DIRTY PELICAN. He is a high school alumni who graciously helped us raise money and celebrate. Many of my high school alumni who have supported me on my journey were there. It’s crazy and so heart breaking after supporting me on my journey all these years now some of their family members have been touched by this wretched disease. One thing is for sure we stick together and walk the walk making the journey a little easier to travel. I can count on them and they can count on me for sure. My husbands softball team mates and their families attended. This disease does not discriminate, not to long ago one of the teammates who had been supporting us on our journey was diagnosed and died. If you take a peak at the photo album the team mates put together a basket in his memory it is the RAIDER basket . My sister and her boyfriend came in from out of state. My daughter even attended which really made me happy. Two of my cousins were there and they got to say hello and thank you to the surgeon who most of you know was the same Doctor who operated on our GMA in 1992. My cousin hadn’t seen her since then. Always there for me through thick and thin and through the years MY dear friend Brigitta who has known me since I was 14. She has been an amazing force behind why I am here today. I can always count on her and her moral support. Many! of my brain buddies attended and submitted baskets in honor or in memory of their loved one. One of my brain buddies who was a HUGE! supporter of gray matters foundation & was a devoted BRAIN BUDDIE. She earned her wings only a few days earlier but her husband Scott Lavery their family & their friends attended. I still believe she attended in spirit FRIENDS TO THE END Cindy LOU! We truly are about #supportnotstatistics . Thank you to my board members who helped Sue Swift and Greta your help with the ticket sales and set up was appreciated. Thank you Carrie Treadwell having you there to celebrate with your daughter meant a lot thank you for attending. Flo and Paul Jones as always you are faithful to show up at “every” event we have we appreciate your love and faithfulness. My best friend SHELLIE WELLIE who made a gift basket in my honor and shared our personal journey through the years. Awww and Stefan Moore founder of CRT who opened his heart and shared the story of the loss of his daughter. He wrote a letter that shared the loss but described and shared the beauty of the life she lived. Scott and Becky who represented the Snyder family. Thank you for the picnic basket and all the extra goodies you brought on behalf of your family in honor of your father. Awww and my beloved Mr. Sanders although no longer here on earth he was represented when his daughter MY FRIEND Janice and her husband Tim Paul not just attended but also donated several baskets to help raise money for my cause. ( not in attendance but a force behind preparing the baskets and always helping are Mr. Sanders grand children also Chris and Sophie) There were countless Brain buddie families who’s attended . Many of the families said they wanted to show to support me because I had touched them by helping their loved one who has since died. They wanted to show and share their love and say thanks. It was amazing! Even our favorite MRI tech Carl showed to celebrate. It was awesome because those of us still getting our scans at Stjoes hospital were excited to see him. It gave us a platform to give him the recognition he deserves. I had friends from my banking days attend. There are a few of the BANKING BUDDIES who have stayed close to me through the years. Jules aka Julie Cooper and her husband attended. Sandra K attended. There is a special story about Sandra K , she was the coworker who took the phone from my hand to speak with the doctor that called me to tell me while I was sitting at work I HAD A BRAIN TUMOR. She helped me take in the news that life changing day. I was so happy to publicly be able to thank her for what she did for me. Since being diagnosed myself 2 others at the bank from my office have been diagnosed with brain tumors. Greg now a survivor and his wife Michelle attended . Scott the other banking buddie BT survivor was not able to make it but supported GMF with a contribution towards that event and has supported us GREATLY over the years and continues to do so. Red Balloon at www.redballooninc.com attended and without them and the social media support and education we would not have been so successful. I can’t say it enough how much they have helped in our success. I can’t forget to mention the amazing guitar donation from @CARRIE UNDERWOOD. The winner of the guitar went to a brain buddie who lost her best friend to the tumor. I happened to have been with the friend when she took her final breath so this connection was even more special. She wrote on the ticket her friends name with a message this is for you AMY who knew that would become the winning ticket. Thank you to my mom and dad ( & step mom )who attended. It’s not often they get to attend so having them show was nice.
I saved the best for last My Husband. He was and is always so kind and supportive towards my passion and mission for THE GRAY MATTERS FOUNDATION. He helped set up and plan the NIGHT OF EVENT. He made the raffle fun and made so many laugh. He has a tough job because when everything is taking place he always makes sure I am ok and not pushing it. The evening would not have been as wonderful as it was if it were not for him helping me stay organized and pulled together. ( I know its hard to believe but it takes a lot to keep my schedule on track and he is for sure a big portion of why I am successful. He is my TOUR MANAGER LOLZ ) It’s all about TEAM WORK! that’s for sure. It was a great night. I could go on and on. There is one thing about life with the sweet always comes a little bitter. Since the party 2 near and dear to my heart have died. It reminds me I must keep doing what I do. People need to know they are not alone. Thank you for being part of the beauty in my life . Lot’s of Love your Brain Buddie, Lanette
It has been said ” YOU LIVE AS LONG AS YOU ARE REMEMBERED” -a Russian Proverb
I have been thinking about my New Years blog. What to do? How to start off the New Year and not write about the typical topics -Cleaning out the clutter-New Years Resolutions or the NEW diet. I figured we can always talk fresh starts, so I chose to stick with a topic that is true to me “CREATING MEMORIES” , being remembered.
I wouldn’t be me if I didn’t take a light hearted fun approach to my topic. The typical way to document or help others remember you is answering the basics Q & A style. 1) date of birth 2) where were you born blah blah boring. Ok boring is harsh but that would be ordinary, same old stuff. I am anything but ORDINARY.
I thought for January we could start something fun. My hope is of course that you will participate. The project will require some written participation ( There is something about the written word.)
The idea is GMF will post fun questions for you to create memory making moments, a “TO BE REMEMBERED” , did you know? book. This is meant to be a fun project not a boring HAVE TO. We are looking forward to interaction on the fan page. Everything we ask you to answer is for your keepsake. If you want to share that’s up to you. We hope this will help you create a fun #memorymakingmoment.
YOU WILL NEED:
a note book/journal Call it what you like. You need something to write the questions and answers on. Be sure to number each question and write it along with the answer.
Here is the plan,
We are going to give you a question a week on MONDAY. We just want you to be sure to write it in the book and answer it. You can ask other friends and family members to participate it will be a fun way to have written #memorymakingmoments it’s our #didyouknowMondays.
We may post extra questions throughout the week add those if you want.
If you have questions you want us to share send privately and we will post to the group or You are also welcome to post the question in the comments .
Life changes everyday let’s LIVE and be remembered. (Our questions are to just get you writing)
* BACK ROUND TO THE IDEA.
A few years back probably 15 I gave my G-ma and my PAP PAP books about sharing memories. The books were a question a day books “tell me your memories”. Well my PAP PAP finished the book as soon as he got it so in 1 year. It is my treasure. (he died from Alzheimer’s. 4 years ago) What is so awesome about the book is it is in his hand writing. I learned so much about him some I knew but a lot I didn’t. What a gift a little book with some simple questions but to see his handwriting forever. I learned His mom my great grandma was a candy maker. ( PROOF I WAS DOOMED to HAVE THESE HIPS lol) & double whammy because my dad’s mom My GMA was a donut maker BOTH SIDES OMG born to be a sugar addict it was in my blood for sure LOL.
Anyhow I gave the similar book to my grandma his wife ( She’s 91 I over see her care now). She took a little longer 12 years later I got it back. It’s wonderful to read and I am so glad I have it but I must say the fun questions I ask her out load now that she is 91 is even more fun. For example I learned my grandma at 89 had never had a pedicure or manicure or GIRLS GET THIS she never had a bubble bath. Well as you could guess YEP this crazy NON ORDINARY grand daughter helped give her 89 year old gma her first BB.
SO many other questions I ask that I am sure many of you would crack up if you knew. It’s the answers that would have you ROFL. I will save for another blog.
Reality check : (
Having my dad’s mom died young 62 and the family was in great turmoil over it. No time for gathering anything that wasn’t already written. My only memories are what is in my head. I have maybe two photos and one piece of paper with her handwriting I CHERISH IT! Reflecting on this , I chose to use this situation as a way to make my pain not be in vain. It was the nudge to share what’s important being remembered.
After working on this post I did find links to some memoir books. I will post links to where you can buy the books and get the basic need to knows answered. They have them for MOMS, DADS, G-PA, G-Ma, & I encourage you to get them. Great gifts. You will be glad you did. I completed one for my kids shortly after I was diagnosed so my kids have one from me. Don’t wait for an illness. Do it just because. Please if your loved one can’t write ask them the questions write their answer. Brain Buddies life is fragile we know that. We will all be remembered, the question is HOW?
Let’s have some fun #MEMORYmakingMOMENTS #DIDYOUKNOWMONDAYS
In November, Lanette had the opportunity to attend the 19th Annual Scientific Meeting and Education Day of the Society for Neuro-Oncology presented by the Society for Neuro-Oncology. During the event, she was able to witness the unveiling of some exciting news! For the first time, it was announced that doctors have discovered a new treatment plan for patients with glioblastomas.
Doctors have created a device that glioblastoma patients can wear on their heads. Patients place the cap on their scalp and wear it constantly. The device provides low intensity electrical fields that stop tumor cells from dividing. Patients who received the treatment lived three months longer on average! Although this is not a cure, that is an amazing step forward in providing patients with more time with their loved ones. After the success of the treatment for glioblastoma patients, doctors are considering other applications for the device.
Below are pictures from the conference provided by Chris Tee from the International Brain Tumor Alliance. The New York Times published an article on the new treatment, click here for the full article. Have questions? Need support? Contact Lanette at firstname.lastname@example.org or 623-205-6446.
Here is Lanette’s take on the exciting weekend!
“My trip to Miami was action packed. Always nice to see those I know and it was great to catch up. Funny when you have to fly to another state to catch up with those that live in the same state. I met up with my good friend and BESTIE BRAIN BUDDIE Sheryl Shetsky President of Florida Brain Tumor Association aka “BRAIN TUMOR DIVA”. We used this opportunity to connect with the medical community and put a face to our organization. Our goals were to share what we do in the brain tumor community with those we didn’t know( educate them of our mission statements which are very different) #2 remind those who do know us that we are still ALIVE “SURVIVING” and remind them we are here to support any of their patients and families. Of course Sheryl’s FBTA raises money for research so her conversations were a little different but we both did what we do best. A big part of attending events like these is to learn lot’s so we can stay ahead of the tumor. What that means is: NEVER CHASE YOUR TUMOR!!!!
Sheryl taught me in one of the first conferences I attended stay ahead of your diagnosis. Never wait for the reoccurrence to start survival search. Stay ahead of it know what’s out there. What are the new and up and coming treatments-technology. What docs are doing what. Well we followed her rule and did just that. We attended the education day and even participated in some lunch break out sessions. Of course this is a doctor and researcher event so some of it was over my head FOR SURE! Over all good things are happening in the world of brain tumors A LOT with GBM’s. The most moving breakout session for me was Neuro Oncology Caregiving. What Do We know and Where Should We Go? Obviously if you know anything about GMF you know this is my heart.
This year’s attendance at SNO I met and established what I am hopeful will be some long lasting friendships. We attended the welcome reception where we had the chance to catch up with Sheryl’s good friend, board member and moderator for FBTA conferences Dr. Steven Brem and his wife , we also met with Arizona’s very own Michael E Berens from TGEN and his wife. I even shared photo’s on our fan page of some of the researchers who think BRAIN TUMORS STINK! Lastly and a worth mentioning “IF ONLY FOR ONE” (I had so many but this is the best ) The Gala was on Saturday and over 300 attended. It was held at the Perez Art Museum it was TOP NOTCH! We could sit where we choose it was a nice outdoor event moonlight just beautiful. The table is a ten top. We are chatting with several of the people at our table and one of the people at the table is the President and CEO of a company that develops oncology drugs. The IF ONLY FOR ONE PART. So we are talking about longevity and how Sheryl is 25 years out with a brain stem glioma and me with Grade 3 Aniplastic Oligo. We talk about GBM buddies and of course I honored my beloved sweet friend david m bailey. This man lives in the same small town david lived in. He starts to tell us how when they invested in this “brain” treatment people started talking about a young man who had lived with a brain tumor yadda yadda. Well Ta DA, I honored my promise. I was able to share the legacy of my sweet friend. I put a face to the young man who was the man who shared hope through word, song. Funny how these things work. I attended my first SNO conference when I managed David’s tours, and would only see him at FBTA conferences. I think our one was not seen but was still close at heart. We had a great weekend.”
Happy November! Everyone thinks of Thanksgiving at this time of year. What do you have to be thankful for? Research has shown that being thankful can improve your overall health – physically, mentally and emotionally, including better sleep patterns, and even heart benefits. Research has also found that another benefit of regularly feeling thankful or grateful is a strengthened immune system. So keep those thankful thoughts flowing! Some days that feels harder than others, so Gray Matters is hosting a challenge to get you in the habit of feeling thankful this month.
You may have noticed recently that we’re posting simple and fun exercises on our Facebook page. The November Thankfulness Challenge started on Monday with a challenge to post a picture of something you are thankful for. Keep a look out for the challenges each week on our Facebook page. Let me know how you’re doing with each exercise, I’d love to hear how my Brain Buddies are feeling after taking each action! Here is the full list of the challenges:
Week One, Mon Nov 3: Post a picture of something you are thankful for
Week Two, Mon Nov 10: Write a letter, text, or call someone you are thankful for
Week Three, Mon Nov 17: Perform a simple act of kindness
Week Four, Mon Nov 24: Give a hug to everyone you are thankful for
That’s it! It really is this simple to feel more grateful each and every day, but sometimes we all need a little support to get there. That’s where your Brain Buddies come in! Visit the Gray Matters Facebook page throughout the month and leave a comment, photo or even a video on our wall letting us know how the exercises are going and the benefits you’re receiving. You’ll be doing great things for your own health and encouraging others at the same time! Have questions? Need support? Contact me here.
I am often asked “How do you do it?”
I just do.
You see, I don’t even have to ask why I do what I do. When you’re doing it, it is part of your daily life, it just happens. Others will always want to know how, and it’s difficult to explain. It’s natural, a part of me. I didn’t train for this, I didn’t plan to begin a non-profit, to help support those in need, to bring them comfort. The cause found me.
If you are reading my blog for the first time, you might be wondering what is ‘it’? Sometimes I ask myself that very question. The ‘it’ that people question is never the same for two people, or it could be different day to day. For instance, recently it was being with a Brain Buddie and her family as she is preparing to leave this life. She didn’t plan this. Her family didn’t plan this! The ‘it’ was walking into a home filled with heartache but knowing that even if for just a moment If I can share FAITH, HOPE or LOVE then ‘it’ is being accomplished. I pull up to the house praying for guidance on my journey today. I walked in to see my friend in her hospice bed. She was receiving meds so I was able to spend a few minutes with her family.
My ‘it’ was whispering in the ear of my friend what an amazing champ she has been throughout her fight with this brain tumor. I shared how much I love her and more. It was making sure her family knows they are loved and that I am hurting with them. No silly words, nothing from a script, just the real me, a friend to the end!
A friend loves at all times. Although I hate what this disease has done, her memory will not be stolen by the brain tumor. I told her I will keep her story alive and tell other buddies she beat the odds! She is our champ. It was a tough day but this is what I am called to do. This is what ‘it’ is. (this was written Tuesday
I love my brain buddies.
Sixteen years ago my life took a completely different turn. On August 12, 1998 I was diagnosed with a baseball size mass. On this day, September 2, 1998, I had it removed, and learned it was a grade 3 Anaplastic Oligodendroglioma. Between then and 2007, I have had 5 surgeries. Before the tumor, I worked as a banking relationship manager. It’s funny how life-changing events can alter your path. I have found support more than statistics is vital to helping share hope or encouragement.
In 2001 I sent my first gift package to a fellow brain tumor patient. That was the beginning of Gray Matters Foundation. You can read my entire story here.
Now here I am, sixteen years later, and Gray Matters and I are still going strong. It’s my ‘Sweet 16’, as my husband has dubbed this year, and we are going to have a celebration. On Saturday, September 20 at 5pm we will be having a party at the Dirty Pelican in Glendale, and will feature delicious food and there will be many baskets and other items raffled, and each will be in honor of one of the many Brain Buddies I have met over the years. We also will have music provided by the 80’s rock band Sluggo, and that will be a great finale to the evening. The whole evening is going to rock! You can get more information and RSVP right here.
I’ve met so many people along the way who have been affected by brain tumors, either directly or indirectly, and on this night we will celebrate and honor everyone. I am so grateful to be able to offer support to all of our Brain Buddies, I hope if you are in the Phoenix area you are able to come out on September 20 and join us. Let’s show everyone at The Dirty Pelican that night that brain tumors stink, that’s what we think!